It is easier to write about something that has happened to me or something I am going through, sometimes I can express how it feels and find the words perfectly, but when something is happening to someone else its much, much harder. When someone else is going through advanced disease activity, deterioration or progression it can be so hard to find the words to say that will help them in the struggles ahead.
You see I have the painful privilege of knowing some of the bravest, most amazing people I have ever met who are facing the most painful times and disease activity and I find myself lost for words. What do I say to these beautiful souls who have fought so hard and so long, only to still be in terrible pain and with terrible disease progression. What can I say? What will bring comfort during these times? My words seem not enough. “Its ok” ,”It will get better” and “Fight harder” are almost insulting when you know that it isn’t ok, it wont get better and they CAN’T fight any harder than they do every second of the day. Telling them that things could be worse is like adding insult to horrible injury. No, its not easy to know what to say during these times. Its agonizingly cruel.
You see these are the people I have come to love, cherish and call my Chronic family. We reach out to each other when we are in pain or needing advice about meds and treatment. Even at 3 am when sleep can’t / wont come. These are the people I don’t have to explain my struggles to because they know. These are the people who know SO much about what I have been through and continue to go through that just knowing they are there (wherever they are in the world) means more than I can ever say. They care more than any doctor, any nurse, any health care specialist, any therapist and many other people will ever care, because they accept and respect you more than most people you will ever meet.
So when one of your “chronic family” goes through a flare, pain, struggles, fighting with the system or facing progression and depression we feel so powerless and useless. We want to say something special and helpful. We want to offer them something that will help them or at least provide the slightest bit of relief. Most of the time though, no matter how much we may want to, we can’t. And that’s the very worst feeling of all.
If I could, I would take their pain and help carry their burdens; even if only for a small amount of time. Anything. I am sure all of us would. In fact I know we would for the ones we love. Sometimes what we want to do for our loved ones goes beyond what we do for ourselves. But that’s the thing about the Chronic family, although we are all so very weak, in pain and struggling, we don’t ask that much of each other other than empathy, advice and compassion. We just feel better for knowing that they are there.
After years of pain, struggling, tests, illness, symptoms and life changes, I met my Chronic family and I came across some of the most amazing people and they helped me more than I can ever describe. I owe so much to them and they wonderful way that some have accepted me and supported me through some of the worst times of my life that it is because of my love for them, and gratitude for what they do that I decided to stop ‘hiding’ away in isolation and I began writing and advocating. I put myself out there in the hope of spreading information and understanding… for them. I know I have made myself vulnerable to judgements, indifference, rejection and scrutiny, but I do it with one goal in mind. Advocacy. I hope that maybe something I write will mean something to the people already part of the autoimmune community and perhaps one day, hopefully, something that I have written might lead to understanding from others and eventually a cure for us all.
Sometimes we don’t know what to say or do for those in pain, but we can always know how to feel for them. I feel love, empathy, gratitude, compassion and inspiration. When I hear that any of my fellow fighters are hurting and struggling I write about it, time will tell whether it makes a difference in the long run… but to me its better than doing or saying nothing.
To all of my Chronic / Autoimmune family out there (millions and millions of you) I hope you remember that although you might feel alone in your day to day struggles, you are still a very important part of this world wide family.
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Gentle hugs back at you